more serious side effect of Zanubrutinib

[CoachVera55]

Its Day 13 & I needed to get moving with my exercise since I seen a 5lb weight gain. On Day 12 I did 45min walk on my Treadclimber but not over 1 mile/hour. And today Day 13 I did 60min on my stationary bike but developed chest pain. It started at 7:30p by 10:30p it wasn’t leaving called my son & here we are in the ER by 11p🤦🏽‍♀️

[skipro]

wow. I heard Dr Brown from Harvard. I believe said it all of the patients she had on zanu had know side effects

Hoping you get some answers very soon.

Good luck,

And God bless you

Skipro.

[CoachVera55 in reply to skipro]

Thanks I would love to hear that presentation.

[Poodle2]

Sorry to hear about this but maybe just take it easy for a while. You started the drugs because you are unwell. Perhaps you didn't feel that way but it's a lot for your body to deal with at the moment. Try not to worry about your weight either. Let the drugs do what they need to do, allow your body to adjust. Eat healthy and go for walks. Once your body gets used to it, you will be able to resume your fitness regime. I know it can be hard but be a bit kind to yourself now. Hope everything is OK and you start feeling better soon. Petra ❤️

[CoachVera55 in reply to Poodle2]

Yes, you are right but exercise is just so much of my life & slowing down but not stopping will be the plan.

[Ellecie in reply to CoachVera55]

Hello Coach, offering support and I think I recognize a bit of myself in what you wrote: I definitely struggle when I come across physical limitations. Mostly disbelief as in “this can’t be happening” and thinking I can will my way through. A strategy that has led to good success in my life. But not necessarily the best strategy now. I have been experimenting with “radical acceptance.” (Which is not the same as giving up, as giving up is a sulk, not acceptance, so I learn.) It’s not easy, but I think may be a good evolution for me, new tools in the box etc. A better strategy for this new situation I find myself in. Sending positive vibes to you. (And please wish me luck too!)

[CoachVera55 in reply to Ellecie]

You hit it on the nail, I’ve Willed myself through everything in my life but here I am in an unfamiliar location. All there test say I am good but I have nonstop chestpain so how can going back to what started it be a good idea??? I am losing what little faith I did have in any doctor. I listened & now I am worst off. I do hear everyone that its confusing to say if its the disease or the medicine but I have 13yrs 8mos of this disease & only 13 days with this medication & now having nonstop chestpain. Its minimized but not stopped. I pray that we all get better & win this battle🙏🏾

[DoriZett in reply to Ellecie]

Wishing Coach Vera55 answers and a speedy recovery. Ellecie - I am in agreement with you about working toward radical acceptance. It is not giving up but changing to accept the reality of what is happening. We can like it or not - but it is happening. What is the old movie quote '"Resistance is futile"!" 😆 It takes so much energy resisting the changes CLL/SLL (and other aging ailments and aging itself) have brought - I have opted to accept and make the best of what I still do have. And focus on gratitude - still being alive with an incurable cancer, and the new medications that are helping us to stay that way (albeit with some side effects). Life as we knew might be gone but that doesn't mean there isn't life still left to be lived. Blessings to us all.

[CoachVera55 in reply to DoriZett]

Amen, Amen & Amen 🙏🏾

[Britam]

I hope all is well and no major problems.

[CoachVera55 in reply to Britam]

All the test came back normal no Heart Attack; EKG showed PVC’s, Chest Xray nml, Labs done both Troponins neg & the rest was so disappointing, CTA Chest/Abd showed basal pneumonia caused by the chest pain, and Echo was told to be nml. Unfortunately on the weekend only Cardiology can clear me for so I signed out AMA. I see Oncology tomorrow & I will hit up my Cardiologist asap. I could not stay after chest pain of 9 out of 10 -> 2 out 10. Plus so many unmasked staff & patients. I felt unsafe & will follow up my both MDs.

[Britam in reply to CoachVera55]

I am glad you are home and I hope you get some answers from your doctors soon. I can understand your concern about the lack of masking by staff. I would have been very nervous to be in the ER with so many unmasked and possibly sick patients.

[CoachVera55 in reply to Britam]

Well we compromised with Acalabrutinib because as tough as I may think I am evidence shows that I am truly a light weight when it comes to medication. Many of my procedures requiring aesthetics I wake up to the staff trying to raise my blood pressure. I would tell them in pain management to only give me half the dose & it works better. I pray this will be a good fit for me & I have canceled my classes until further notice, maybe 3-6 months 🤷🏽‍♀️ Plus no more than 15 min of mild walking from here on 🤞🏾

[Britam in reply to CoachVera55]

I am glad that you and your doctors have a plan that will hopefully work well for you. If you happen to get any headaches that are sometimes associated with acalabrutib I understand that drinking coffee should help. Be sure to take things easy the first few weeks until your body adjusts to the new medication. I hope this treatment works well for you as the zanubrutinib is doing for me.

[CoachVera55 in reply to Britam]

Yes thank you. I love the rave reports that Zanubrutinib is getting & even being considered to be the standard of care for CLL. I think it might be too strong for my system. I had a lot of inflammation & tenderness in my mouth, fingers tingling, my stool seemed more irritating & my feet hurt if I stood too long. I even had really bad joint pain especially with my previously injured areas my right knee, left hip & my back was so bad. The chestpain was just the last straw. I even lost 5lbs of pedal edema in 2 days. I sure hope it works because it has to🙏🏾 Good luck on Zanubrutinib too🎉

[SofiaDeo in reply to CoachVera55]

While zanibrutinib is now considered *a* first line agent, it is one of several. I would not consider it *the* standard of care, there are a number of options considered first line. Our disease is too heterogenous, IMO we really need to look at a number of things before selecting a treatment. Individualize it to the patient, not start everyone out with the exact same drug protocol for initial therapy. There generally is no single thing when referring to "standard of care".

journalofethics.ama-assn.or...

From the above:

"Standards of care" should not be thought of as a single, uniform whole. Rather, the appreciation of the different types and their different functions facilitates more thoughtful discussion and may even reduce apparent conceptual disagreement.

[scryer99]

I was a 100+ mile a week cyclist before CLL, but now I'm not sure I could manage 30 minutes on the stationary, much less 60. You're tougher than I am!

I've been on Zanubrutinib for 4 months now. I have experienced chest pain, and just did a CT scan for it last week. But the concerns cited were 1) spleen pain and 2) lung embolism (which the CT eliminated as a cause). I don't believe in my case it was a direct result of the drug, more a direct result of the CLL conditions that caused me to take the drug.

Is the chest pain more left-hand side? Several inches left? Might be spleen issues.

I've had multiple ER visits for this pre-treatment, but the causes turned out to be spleen pain and grade I/II lacerations, brought on by movement of a spleen stressed out by accumulation of lymphocytes. It hurt quite a bit. Zanubrutinib causes ALC elevation at onset and it might be accumulating in your spleen. If that's the case, it will subside eventually, although might need some help with steroids.

Make sure the ER doctors know you have CLL, because your standard blood work they'd do in an ER is subject to hemolysis, which if not managed will create spurious potassium readings that will put the ER in heart-attack mode. I had potassium spikes up to 9, which will freak out any ER department.

None of this, of course, means you may or may not be having heart issues. Good luck with your tests and treatment and I hope you feel better soon. Chest pain is always a fright.

[CoachVera55 in reply to scryer99]

Exercise is my therapy, it brought me back to life🙏🏾 But I do contribute it to the drug & my strenuous workout. Just seen Onc & Acalabrutinib is the compromise & even half dose it in the future if I develop a similar problem. I will ease up on the exercise & go harder in the kitchen. I see Cardiology tomorrow & a Stress Test is what is recommended, so lets get it & be certain looking at the whole picture; in this hospital I could tell that the weekend crew may not be as skilled as the M-F crew because that’s what we the regular staff would do. I have no lymphadenopathy really, spleen & everything looks good. Zanubrutinib maybe good but curing me in 13 days I think not. So that makes me wonder about all the tests done. My Cardiologist of 20yrs can follow up & send me where I have all my diagnostic test done so they have some comparisons to do🤷🏽‍♀️

CTA Abdomen

[GRMat158 in reply to CoachVera55]

Sorry to hear that you have this problem and I fully understand your 'need' to exercise.

The rest of this reply comes with the usual caveat that no two of us will react to treatment in the same way - this is merely my experience 😀

There is no doubt in my mind that CLL has caused me to be less able to tolerate exercising hard. However, I don't think that I have had any specific problems related to taking Zanubrutinib. It is difficult to separate the effects of the disease, the treatment and the fact that I am getting older 🤣 but it is definitely clear that what I can do now is far less than what I used to be able to do.

My current strategy is to build up slowly with any exercise - keeping well within my limits to start with and then testing them little by little. The limiting factor is usually something completely unrelated to my CLL - pulled muscle, simply overdoing it a little or even other things getting in the way. Of the many (😉) times that I have had to ease off or start to build again I don't think any of them can be attributed to the Zanubrutinib.

All of this has, of course, caused me to change my goals and targets - in terms of distance, pace and frequency of exercise - which explains, in part, why a little while ago I was rather inordinately pleased to cover 5k quicker than my old 10k PB 🤣🤣 Yes, I am slower - Yes, I recover more slowly - Yes, I have less energy - but NO - it has not stopped me exercising altogether.

So - I agree with the others that you should definitely investigate what is causing your chest pain - that clearly needs to be sorted and it may well be related to your exercising. However, IF my experience is typical then Zanubrutinib is not the primary cause.

Hope you get this sorted quickly

[CoachVera55 in reply to GRMat158]

Yes I agree I must deal with the reality of this stage 4 disease, getting older & the side effects. If anyone remembers, I don’t like medicine because it doesn’t like me. I have so many drug allergies & always get the worst side effects. The Onc wanted to show me the known reported side effects of Zanubrutinib & I told him to list chest pain now lol. Some complained of Alopecia & thats not listed🤷🏽‍♀️ We are individuals & may have different side effects, even those not listed. So I am off of the medicine until pharmacy gets it & Cardiology clears me.

[CoachVera55]

So update; EKG done showed PVCs, Bloodwork, Chest Xray & CTA of the chest/abd & Echocardiogram planned. I am disappointed since my numbers are worst than baseline.

Hgb 9.6 (my lowest), Platelets 46 (absolute lowest), WBC 81 (baseline), Lymph # 81/ % 99.2. Neutrophils 0, Monocytes 0, Basophil 0, Eosinophils 0.65(nml)

CTA showed RUL thin walled cyst, bibasilar subsegmental & dependent atelectasis Heptobiliary; Periportal edema

Chestpain 18hrs after last dose 5/6 1:30p is down from 9/10 to 5/10, I wasn’t monitor closely & Chestpain is a definite no for me🤷🏽‍♀️

[Justasheet1 in reply to CoachVera55]

CV,

Please try to stay positive although difficult going through what you’re experiencing right now.

These new drugs affect everyone differently but if one isn’t meant for you there’s others thanks to modern medicine.

Once you’re back on your feet I’m sure a discussion with your doctor will provide you with some good results.

Jeff

[CoachVera55 in reply to Justasheet1]

Thank you so much❤️ Yes I just need to take this more serious & realized how blessed I am to have had 13yrs 8mos to get informed & real about tackling this Blood Cancer. Someone said that while in W&W it seemed like we did not have cancer, so I have to snap out of it, approach things with that gratitude & stay focus. I have an appointment with the old Oncologists & the Cardiologist who would not discharge me is saying how my Onc wants me to continue the Zanubrutinib, I don’t find that to be a good recommendation but I need a Cardiac Clearance first from my trusted Cardiologist & a discussion on different therapy. Chestpain is not an acceptable side effect.

[Edalv in reply to CoachVera55]

I agree, you may need to find another therapy or another doctor… stay strong

[DriedSeaweed]

I would keep digging with the doc. Maybe it is related to zanu. Maybe not. I would be concerned about stopping a treatment for one medical issue because of another medical issue happening at the same time.

[CoachVera55 in reply to DriedSeaweed]

Absolutely I am fearful that I created a new problem but this chestpain side effect is not acceptable. Exercising probably was the catalyst of this final side effect reaction, either way I can’t take it & I am home alone & it stops my heart🤷🏽‍♀️

I can raise the Hgb, not really the platelets & WBC/Lymph is at baseline. I believe I have wiggle room & I need this chestpain to be zero before I start anything…🤦🏽‍♀️

[DriedSeaweed in reply to CoachVera55]

Did your CLL doctor chime in yet to say if they think it is related to zanubrutinib? It is common for us to attribute an adverse event to a new drug when there could be something else going on in the body coincidentally at the same time. If there is no evidence of a link between the chest pain and zanubrutinib I would ask the CLL doctor what the best course of action is. Fortunately there are alternatives. But does the doctor think you should give up on zanubrutinib if there is no evidence to suggest it caused the pain?

I was hospitalized in March for a severe autoimmune attack that produced fever and subcutaneous lesions in my extremities that glowed extremely hot on PET scan. I could barely walk. I had a Neulasta injection the week before. My neutrophils skyrocketed the day the symptoms started and tanked a couple days later. Infections ruled out.

I am tempted to pin the blame on the Neulasta. Timing of when the drug is supposed to work almost perfectly matched. But there is no evidence. Just suspicion. I can’t continue my CLL treatment with venetoclax unless I get Neulasta shots every couple weeks. The Dana Farber CLL specialist’s experience is that pegfilgrastim (Neulasta) is more effective than filgrastim (Neupogen).

I have had two Neulasta shots since the dramatic event. No “side effect”. Perhaps it wasn’t related.

[CoachVera55 in reply to DriedSeaweed]

I am so sorry about your episode too. It can be hard to pin point things but it was more than likely the combination of strenous exercise on Zanubrutinib that brought it on. And Onc did say that its not a listed side effect & I said well lets list it now. 13yrs 8mos of CLL & no heart issue until 13days of Zanubrutinib is suspicious to me. 60-90 of Cardio is what I did for years. I just made the cut to start treatment. WBC/Lymph just doubled Nov-April, Hgb under 10 & Plts under 100. We compromised with Acalabrutinib. Because I can not take something that I believe is harmful to my heart🤔 I pray that its a better fit🙏🏾🙏🏾🙏🏾

[DriedSeaweed in reply to CoachVera55]

acalabrutinib is more on target so the odds may be in your favor

[SofiaDeo]

Early into our treatments, we are killing off bad CLL cells and metabolizing/excreting them. IMO if one does excessive exercise during induction, you are preferentially pulling energy away from other organs. You can "make" your arms and legs move, but your heart, liver, and kidneys can't readily send signals to your arms & legs to stop it/slow down. Until they do: dizziness, heart pain, side aches, etc., lab abnormalities. They may be medication side effects, they may be symptoms of your body trying to tell you to decrease your skeletal muscle/physical activity temporarily.

I think stretching, yoga, mild cardio is fine. I wouldn't jump on a treadmill, or go for a strenuous hike, for an hour, early into induction. Some people are reacting strongly to the BTK's and killing cells faster than anticipated. Maybe look at your types of foods, and if possible change to nutrient dense lower caloric, lower glycemic index/carb ones. If you cut your starches and sugars, that itself generally causes weight loss in most people, since you aren't stimulating insulin to deposit fat. Once you are eating fewer carbohydrates, than your personal body genetics dictates your insulin to deposit those carbs as fat instead of burn them as energy, the weight should come off. As long as one is also getting enough protein to be in a positive nitrogen balance. This is more complicated in diabetics, and other disease states, and needs a doc to advise changing food types and how quickly.

My mother, like most of her siblings as well as her parents, developed diabetes in their 40's. I learned about the carbohydrate-insulin relationship in college. I also noticed that my families diet was overall heavy on starches and carb rich foods. A few of my cousins and I chose to eat differently; more salads, fewer starches, less sugar. None of us have diabetes. My cousins who ate what our parents did, do. And my mom's blood sugar used to dip to normal when visiting me, to the point of having to stop her diabetes pills or get hypoglycemic. I didn't keep the stuff she usually ate, and when she ate what I normally did, her blood sugar dropped. She also used to lose weight lolol.

[CoachVera55]

I didn’t really consider what Stage IV Cancer Treatment entails & so busy being more concerned about keeping things the same. The 13yr 8 mos denial continues. I just pray I didn’t do permanent damage🤦🏽‍♀️ I will focus more on my Plantbased Cuisine 💯 when it comes to weight loss. So even if my Homegym will be on hold for a minute then my Custom Kitchen can move forward 🙌🏾

Eggplant Stew over Zucchini Noodles, RAW Kale & Sweet Potatoes Chips😜

[CoachVera55]

Amen, I was so deep in denial 13yrs 8mos thinking I would never need treatment. Then I pick the best one, the new one & this chest pain side effect is just unacceptable. So we got some more treatment options, I not even throwing combine treatments out the window if I am monitored properly. Not just prescribe this expensive med & give me an appt in a month😫

[LuzyCLL]

Excellent choice, yum

[blowinginthewind]

If there is pool close to you, perhaps start by swimming - I started at 2 lengths and eventually got up to 2 miles. Public pool with lifeguards, not one at home - sadly not got on at home, here in UK, only millionaires have home pools. I have a disability unrelated to CLL - had an accident, which wasn't my fault, 20+ years ago. I can walk in a swimming pool, but very limited in how far I can walk on dry land - yards rather than miles.

[CoachVera55]

Nope you read it right; CTA showed RUL thin walled cyst, bibasilar subsegmental & dependent atelectasis Heptobiliary; Periportal edema. The CLL is nothing but inflammation, so maybe that is why the hospital Cardiologist & Oncologist is saying restart the medication? 🤔 Echo showed 🔝 my normal baseline so now I am crazy because you can’t find the ischemia/injury or infarction??? This too shall pass but right now I feel like a Cardiac Invalid 😓 Oncology appt today & Cardiology tomorrow. I need a Cardiac Catherization and/or Stress Test but will the CLL behave while I do all this after Zanubrutinib dropped my Hgb 9.6 & Plts to 40??? LORD protect your Child, ME🙏🏾🙏🏾🙏🏾

Echo Results

[jimvan]

Hey CoachVera55, I just switched from Ibrutinib (taken for 5+ years) to Zanubrutinib (about a month ago) for CLL, and I just want to say that you are in much better shape than I am! I'm impressed with the workout you detailed. I did 27 minutes this morning on my treadmill, ramping up to 30 minutes tomorrow, and I know that my longterm treadmill use has been beneficial for my mental and physical wellbeing. I'll be thinking of you as you resolve the issues you have encountered. All the best, Jim